The Role of Determination and Mindset in Managing Parkinson's

[pdpatient]

Many of us living with Parkinson's draw on will power, mental fortitude, and a stubborn resilience to push back against the disease. I'm curious to hear from others - in what ways, if any, do these types of determined attitudes and 'never give in' mindsets help manage symptoms or slow progression? Alternatively, are there downsides to this approach we should be mindful of? How can we balance acceptance with perseverance as the disease progresses?

Please share your personal experience with any lessons learned. Medication alone is not enough to provide the relief that we are looking for. Therefore we need to explore the psychological factors that influence symptoms management and hopefully help deal with the progressive course of the disease.

Thanks in advance for sharing.

[Hope-full1970]

My Neurologist told me the one thing that's proven to slow progression is exercise. I am persistent in this expecting results. I look at never giving up as a good thing! I have seen results from fast walking 3 times a week for 13 weeks so far. I am walking much faster, no tripping no limping. I have always exercised with weights or aerobics but I have seen the biggest difference with the fast walking. My regular Dr.told me what I'm doing is just as good or better than what the meds can do.

I'm not on meds yet and my walking and energy have improved.

I do get down and discouraged once in a while. To be realistic I ask my husband what he sees improving so I'm not just being overly positive.

I think for each person weather you are on meds or not, it's about keeping your stress level down and keeping your self as healthy as possible spiritually,physically and emotionally. The goal I think should be to try to do natural supports so your meds are kept to a minimum and you are living your best life possible.

We are closer to better treatment and a possible cure more than ever.

[SereAve in reply to Hope-full1970]

sono assolutamente d’accordo! Anche io faccio esercizi in palestra per 5 volte a settimana potenziamento muscolare, equilibrio, stretching e abilità oltre alla camminata che mi sembra veloce considerando la malattia. A due anni dalla diagnosi non assumo levodopa solo MIRAPEXIN a basso dosaggio e integratori quali la vitamina b1 due volte a settimana fiale intramuscolo.

Dobbiamo secondo me ogni giorno trovare forza e motivazione per andare avanti nel migliore dei modi. E’ importante coltivare passioni e stare bene e sentirti utili. Continuo a viaggiare: una volta l’anno vado a trovare mio figlio in Canada (abito vicino a Venezia) e andrò anche il prossimo luglio!! Never give up!🙏😁

[pdpatient in reply to SereAve]

Here is the English translation :

I absolutely agree! I also do exercises in the gym 5 times a week, muscle strengthening, balance, stretching and skills in addition to walking which seems fast considering the disease. Two years after diagnosis I am not taking levodopa, only low-dose MIRAPEXIN and supplements such as vitamin B1 twice a week in intramuscular vials.

In my opinion, we must find strength and motivation every day to move forward in the best possible way. It is important to cultivate passions and feel good and feel useful. I continue to travel: once a year I go to visit my son in Canada (I live near Venice) and I will go next July too!! Never give up!🙏😁

[Neurosmith]

I believe it plays a big part. You might check out the PD SELF program that, recently taken over by Davis Phinney Foundation. (davisphinneyfoundation.org/....

[Parkinsons77]

morning HOPE

I am in a similar situation to you no medication but exercise and diet being the principal therapy

Diagnosed one year ago

I go to the gym 4 times a week with my gym buddy [my wife] with trainer on two of those days

And on the days not there do workout on 2 days of exercise bike and

Stretching Pilates type but need to walk more of which I’m doing as well

Mentally I’m with you keeping focused and positive input from my wife

Just for info my supplements are Maca root 3xmg per day

VitaminB12and D lions mane x1 per day plus Chaga mushroom extract 1 per day

I also have symbyx red light therapy

I also believe that I the coming year or so that more treatments will be there to assist

But be positive in the down moments and absolutely continue the exercise

Even on rainy /bad days

Continue to be strong

Mr W

[SereAve in reply to Parkinsons77]

potresti darmi i dettagli e la marca e dove acquistare i tuoi integratori?

[Hope-full1970 in reply to Parkinsons77]

It sounds like you're doing great!!I also take Lions Mane and do Pilates. Keep your positive attitude!

[Esperanto]

Placebo treatment has been reported to improve subjective and objective measures of disease in up to 30-40% of patients with a wide range of clinical conditions. A review of 8 clinical trials on the effects of antitussive medicines on cough associated with acute upper respiratory tract infection shows that 85% of the reduction in cough is related to treatment with placebo, and only 15% attributable to the active ingredient. It is always said that PWP are extremely placebo sensitive, but it really seems like a general human phenomenon.

A positive mindset is important to everyone, but with us it can help reduce stress. That is crucial and can create a positive vicious circle, minimising the impact of PD. Conversely, you can also easily caught in the negative spiral. Putting all the effort to prevent that has for me almost become a goal in itself. So keep smiling! 🙂

[Xauxatz]

I guess it is not just about having a positive mindset. It is about not accepting the disease and being committed to fight against it. The latter may be an unrealistic attitude and be akin of denial, and so not necessarily beneficial longer term. I think this is what the question is about. I'd like to know as I have this attitude myself, taking supplements, exercising and staying off meds until we have a disease modifying treatment

[Esperanto in reply to Xauxatz]

You yourself indicate that this may not work in the long run. Acceptance so that PD does not dominate your life, but still doing everything possible to make that possible and keep the symptoms somewhat under control. A positive mindset is not the solution, but it will help you in this.

[Esperanto]

Researchers from Nijmegen suspected that a "silver lining," a positive outlook on Parkinson's disease, has a beneficial influence on its course and prognosis. For example, living more consciously contributes positively to mental health and makes accepting the disease easier. Their publication concerns an exploratory study on this topic and serves as a starting point for discussion.

In combination with a video by Bas Bloem, I have posted this information separately. After all, this is an interesting study with a daring question.

healthunlocked.com/cure-par...

[PDHomeo]

Hi

Thanks for your great question! For me it is very important to never indulge in any self pity or feeling victimised by PD. If I feel that mind state lurking, my antidote is to practice gratitude, including gratitude for my body Pd or no PD! I am learning a lot about myself from this experience. From that place I can find the positive attitude to do whatever the day requires.

[Bonzu]

Unfortunately Pramipexole and madopar do not seem to have an effect on me. For 6 years I only had mild voice problems. Mine main problem was right hand tremor. Then I went a bit downhill due mainly to stress of getting COVID. I started dragging my foot . It is not easy to walk fast when you are dragging your right foot!! Even so I still average. 14000 steps a day. Roughly. 1. Hour walking outside and 1 hour on the treadmill.

Tried CUE-1 and Vilim Ball for tremors but alas no success.

Now starting my 10 year and runnning out of options.